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Special Children,
Burden or Blessing?
Like Hans Christian
Anderson’s legendary
tale of the Phoenix
bird that rose from
the fire, valiant
and inexhaustible
parents of children
with special needs
have emerged with
the boldness to
shape a new world
that embraces their
children’s
uniqueness.
Today, more than
ever before,
children with
disabilities have
greater
opportunities to
develop their full
potential, due in
large part to people
like their
courageous parents
who saw beyond
circumstances and
dared to imagine
possibilities.
Thirty years ago,
parents of children
with disabilities
had little say in
their child’s
education. Now, more
than 85 percent of
parents of children
with disabilities in
preschool and
elementary school
are actively
involved in planning
their child’s
individualized
services, according
to the report
“Twenty-Five Years
of Educating
Children with
Disabilities: The
Good News and the
Work Ahead,”
published by the
American Youth
Policy Forum.
Once a group that
was mostly ignored,
children with
special needs –
about 96 percent –
learn in regular
schools with
non-disabled
children, rather
than in state
institutions or
separate facilities.
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Dr.
Maria
de
Pilar
Levy,
director
of
the
neighborhood
Clinics
Health
Care
Systems |
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There has
also been a slow but steady
climb of high school graduation
rates for students with
disabilities and college
enrollment rates have more than
tripled in the past 20 years.
With a college degree, they now
fare nearly as well in the job
market as non-disabled college
graduates.
In
general, reported disability is
lower among Latino children
under 18 years of age with 5.8
percent as compared to the 7.8
percent for non-Latino children,
according to Dr. Stephen Kaye of
the University of California,
San Francisco.
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Saint
Catherine,
Canada.
Left
to
right:
Leiza,
Edgar
Andres,
Natalia,
Edgar
Sr.
and
Andrea |
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Andrea
with
her
father,
Edgar
Sandoval |
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Left
to
right:
Andrea,
Natalia,
and
Edgar
Andres |
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However, according to
the Centers for Disease
Control (CDC), Latinos
(11.8 percent) account
for a higher prevalence
of Down syndrome in the
United States, versus
the rates among
non-Hispanic whites (9.2
percent) per 10,000 live
births.
Dr. Maria de Pilar Levy
who is the medical
director of the
Neighborhood Clinics
Health Care Systems for
Cook Children’s Health
Care System in Fort
Worth, Texas, notes that
Spanish-language public
awareness campaigns are
helping to address some
health issues prevalent
among Latinos such as
the high incidence of
spina bifida that may be
attributed to lack of
folic acid in the diet.
But, there is more work
to be done. The parents
of children with special
needs in this story
represent countless
others who are not only
raising their children
to become integral
members of society, but
are simultaneously
helping to improve
educational, health care
and public policies for
other Latino families.
Like many parents who
learn their child has
cerebral palsy, Leiza
and Edgar Sandoval were
at first devastated by
the news. “What we
didn’t know at the
time,” says Edgar “was
how much joy she would
bring into our lives.” |
Leiza
agrees, “It was the death of a
dream, but God gave us new
dreams.”
The
Sandovals’ optimism is rooted in
their faith and in the ability
to focus on Andrea’s
extraordinary ability to
accomplish the ordinary. Today,
Andrea attends public school and
is able to feed herself and use
a touch-screen computer. “She is
always tapping her feet or
singing,” says Leiza. “She is a
lot of fun.”
Born
prematurely at 32 weeks, Andrea
wasn’t diagnosed with cerebral
palsy until she was 10 months
old. Cerebral palsy affects body
movement and muscle coordination
in varying degrees. Treatment
can often improve a child’s
ability to lead a high
functioning lifestyle. “The
earlier they can have attention,
the faster they can develop
skills,” says Edgar who is a
general manager for
Multicultural Business
Development at Procter and
Gamble.
Andrea’s
parents serve as daily advocates
at school and are attentive to
new treatments for their
daughter. “It’s important to
have the right tools,” says
Leiza. “To help Andrea with her
communications issues, she has
this wonderful computer device
to help her be understood. It’s
hooked through her wheelchair
and goes wherever she goes.”
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in
March
of
2002,
family
Marin
visits
Former
President
of
Mexico,
Vicente
Fox
in
Los
Pinos |
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Family
dressed
up
for
halloween
in
1998 |
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The
Sandovals also recognize the
importance of planning for
Andrea’s future care in case of
an emergency. They are prepared
with insurance coverage,
financial provision and family
support to provide for Andrea.
Planning
is a way of life for the
Sandovals. “We have crafted a
family plan so she can come with
us and be a full part of
everything we do,” says Edgar.
“We have
relied heavily on our faith to
carry us through this,” says
Edgar, “so we’re still hopeful
she will achieve her potential.
With God, all things are
possible.”
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Eric
at
the
age
of 6
in
1991
with
Rosario
Marin |
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The Sandovals’
immeasurable love and
infectious joy extends
beyond borders. They
recently adopted a
three-year old girl from
Guatemala.
Rosario Marín once
dreamed of getting her
MBA and becoming a bank
president. In her book,
“Leading Between Two
Worlds,” Marín
eloquently recounts with
candor the pain of
giving up her dreams of
a higher education, her
banking career and
having to sell her house
to take care of her son
Eric born with Down
syndrome who required
extensive medical
attention.
Her sharp detour took
her instead to the White
House where she served
as U.S. Treasurer and to
a position she holds now
as California’s
Secretary of the State
and Consumer Services
Agency.
“If Eric had not been
born with Down syndrome,
my life would have been
different,” says
Secretary Marín. “He
gave me a different
purpose in life.”
“At first you reject the
disability with all your
heart,’ she explains.
“Sometimes you think
you’re rejecting the
child, but you’re just
frightened of the
unknown. You need
somebody to explain to
you that what you are
feeling is normal and
human.” |
Secretary
Marín recalls the defining
moment when her new purpose
emerged. She was feeding Eric
when he suddenly stopped
breathing. On the crevice of two
worlds, the life and death of
her son, she remembers pleading
with God, “I don’t care about
the Down syndrome. Don’t take my
baby!” she says with a tremble
in her voice. “As God saw it, he
let me keep Eric.”
“To this day, we don’t have a
society that embraces our
children,” says Secretary Marín.
”My purpose in life is to leave
this world a better place for
people like Eric. If I do my job
well, there will be no worries
because there will be a society
that will take care of him. Then
all the sacrifices of my entire
family will be worth it.”
With a
supportive husband who offered
to help fulfill her new purpose
by staying on top of the
home-front, this Mexican
immigrant became an advocate for
other parents of children with
special needs, many of whom did
not speak English.
News of her work reached the
halls of California’s state
capitol finding support among
legislators and eventually
getting the attention of then
Governor Pete Wilson who
recruited her to his
administration. Her ascent in
politics led her to numerous
influential positions including
becoming the first Latina in
California to run for the U.S.
Senate. Secretary Marín’s
resilient work to forge a better
understanding of children with
special needs has reached
international platforms
including China.
“My peers are now going through
the empty nest phase,” says
Secretary Marín. “The best gift
is that I won’t go through that.
There will always be dancing in
my house so long as Eric is with
us. There will always be music
in my house. My house is never
empty because Eric fills it with
joy and happiness.”
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Alexis
with
her
dad
Massey
Villareal |
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Alexis
during
cheerleading
practice |
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Cindy
Villarreal chose to leave her
job with her husband’s computer
consulting company to raise her
children and grandchildren
before discovering she was to
give birth to a child with Down
syndrome.
“Alexis is
just like any other child to
me,” says Villarreal. “She has
needs as any child would have
but with the need for therapy.”
She says that her child has
renewed her faith.
Villarreal’s daughter whom they
affectionately call Lexi, their
little angel, has a busy
schedule with jazz, tap and
ballet. In addition, she has
cheerleading practice and shares
the unpopular responsibility of
all other school children –
homework.
Lexi attends a public school
that integrates children with
special needs with “typical”
children. Villarreal describes
the new program, “With extra
teachers and an aid, they
[children with special needs]
begin to model their typical
peers to help them be a part of
society. At the same time, the
other children learn compassion,
kindness, and how to lend a hand
if necessary. They also learn
not to be fearful of people with
special needs,” she says.“There
is still room for improvement,”
adds Villarreal. “With parents,
teachers and administrators
working together, we work out
the kinks. There is a lot of
communication and redirecting so
we have to help each other with
creative ideas.”
To help
other parents of children with
special needs, Villarreal is
part of The Arc of Fort Bend and
the Down Syndrome Association of
Houston.
“There is much joy in raising a
child with special needs,”
concludes Villarreal. “There
will be trials and tribulations,
but what life doesn’t have
that.”
Sara Diaz,
formerly a reporter and
linguistics professor, left her
native Colombia to follow the
love of her life to the United
States. With her husband at her
side, Diaz later found a more
indescribable love through her
son Nicolas who was born with
Down syndrome.
After
three years in this country,
Diaz gave birth pre-maturely at
6 months and 2 weeks to Nicolas
who arrived weighing only 2
pounds. He was born only one
year after the death of her
first child who died shortly
after birth.
“Children like him aren’t born
just anywhere, but in very
special homes,” says Diaz. “He’s
a miracle to me.”
But Diaz
soon learned that she would need
to fight for this miracle. The
realization that confrontation
would be her companion came when
Nicolas was undergoing early
intervention therapy at about
age two. Without notifying her,
the institution halted his
occupational and physical
therapies. When Diaz questioned
their decision, the
administrator responded, “Don’t
you know that your son will
never get ahead? The people in
your community don’t understand
much.”
Diaz then
mustered an unfamiliar strength
to make a compelling case that
led to the dismissal of those
administrators responsible for
cutting back services to her
son.
“You have
to be very strong,” emphasizes
Diaz who also learned about the
intricacies of therapy. “My son
couldn’t walk because he had
weak muscles, so he’d roll on
the floor. I would put toys at a
distance so he could exercise
reaching them.”
As an immigrant with a language
barrier in a new country, Diaz
initially not only found it
difficult to confront
educational and health care
providers, but to find the
appropriate resources. The need
to defend her miracle, however,
has propelled her to the role of
advocate. Currently, Diaz is
working part-time at The
Federation for Children in
Boston providing information and
support for the Hispanic
community. She also coordinates
a support group for
Spanish-speaking parents of
children with special needs.
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Sara
Diaz,
husband
at
her
side
and
son
Nicolas |
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“My goal
is that people will learn that
they are not alone,” she says.
“Se puede salir adelante.”
Magdalena Beltrán del Olmo
became a single parent of a
child with autism when her
husband, Frank del Olmo, a
Pulitzer-prize winning
journalist for the Los Angeles
Times died of a sudden heart
attack nearly four years ago.
“The ten years Frank and I lived
together, we could not have done
it without each other,” she
says. “It was hard with Frank
and now it’s harder without
him.”
Del Olmo,
vice president of communications
for The California Wellness
Foundation (TCWF) began her
odyssey with autism when her son
Frankie turned two in 1995. “We
gradually started to lose him,”
she recalls. “He stopped making
eye contact and started strange
repetitive behaviors.”
Autism is
a neurological abnormality that
makes it difficult to
differentiate among the many
sensory stimuli like touch,
light and sound. Exposure to
such stimuli, results in sensory
overload that causes people with
autism to shut the world out,
withdrawing into themselves.
Autism is now the
fastest-growing development
disorder in the U.S. reported to
claim one in every 150 children,
according to the CDC.
Through a
series of events, they connected
with a progressive network of
parents and medical experts
interested in research and
science to treat their children
with autism. They also became
involved with Cure Autism Now
that increased their exposure to
cutting-edge therapies and
doctors.
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Frankie
and
Magdalena
in
Monterey
County
celebrate
Halloween
by
hanging
out
with
a
Giant
Jack
O’
Lantern |
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Beltrán
del
Olmo
family |
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“We did it
all,” she recalls. “Diet
modification, private tutors,
play therapy, hearing
treatments…things people never
heard of.”
“At first, Frankie was just a
little body,” she says. “Birds
chirping sounded like thunder to
him.”
Frankie’s
trek through the myriad of
therapies began when he was
about 2? years old six hours a
day, seven days a week. With a
flexible work schedule,
supportive staff and her
sister-in-law who handled the
home-schooling and driving
Frankie to his appointments for
therapy, del Olmo was able to
continue in her executive role
at TCWF.
The del
Olmo’s fierce determination paid
off. “Today Frankie is
high-functioning,” she says.
“What’s emerged now is this
amazing child with an amazing
mind and an extensive jazz
collection.”
“Frankie
went from not having any speech
to introducing actor Dustin
Hoffman at an event before 800
people,” del Olmo says with a
gleam of maternal pride.
“My first
priority is Frankie,” she
stresses. “I have to help him
reach adulthood.” Yet, her reach
goes beyond touching Frankie’s
life. Del Olmo sits on the
California Legislative
Commission on Autism. And, soon
after her husband’s death, she
co-edited “Frank del Olmo:
Commentaries on His Times,” that
presents his most memorable
columns, including a chapter
dedicated to Frankie and autism.
The book,
available through the California
Chicano News Media, continues to
give a voice to the challenges
families with autism face.
At home,
del Olmo’s file bins speak
volumes of the arduous paperwork
required to stay on top of
Frankie’s therapies, school,
insurance and legal issues that
sometimes arise. “In addition to
being a pseudo doctor, I had to
be like a paralegal,” she says.
Now 15 years old, Frankie
requires less extensive
therapies. Nevertheless, her
19-year-old nephew helps her out
and her flexible work schedule
allows her to spend time with
Frankie.
“Things
that parents take for granted,
we had to work very hard for him
to enjoy,” says del Olmo. “I
never thought I’d do normal
things with Frankie. Going to
the beach was nothing he could
do before. The feel of sand used
to feel like sand paper.”
“Frankie has taught me not to
give up hope. We didn’t just
trust the system. We went beyond
what people were trying to tell
us to do,” she says with a
fighting spirit.
By Myrna Gutierrez |
